Although I don’t talk much about it any more, my husband and I raised a child with what has become known as “special needs.” When I gave birth to him in April of 1995, there was no indication that he was anything other than a healthy nine-pound baby boy. But three years later, a developmental pediatrician would rock our world.
“In my opinion,” the Air Force doctor at RAF Lakenheath said looking into our widened eyes, “your son has Atypical Autism.” A couple of hours later, we were frantically grabbing every book on the subject in the library, determined to prove the doctor wrong.
I recall one passage in an outdated book that painted a grim picture of the “typical” scenario: Parents receive the diagnosis and are determined to get their child all appropriate treatments. They are encouraged when their child makes progress with aggressive interventions. But as the child grows, the gap between him and his peers widens. As an adolescent, he wants friends, but is confused by nonverbal cues, facial expressions and gestures. Unable to develop peer relationships, he seeks the comfort of his daily routine — watching the same television shows every day, and pacing around the perimeter of his backyard. The parents realize that their son’s delays are insurmountable and accept that he will never lead a normal life.
We put that book back on the shelf. It was the only time in our marriage I would ever see my husband cry.
This prognosis was too painful to consider, so we did whatever we could. The next eight years were a blur of home therapies, speech therapies, occupational therapies, physical therapies, gluten-free casein-free diets, prescription vitamins, sensory integration regimens, IEP meetings, monitored peer play dates, doctor’s appointments, and mountains of insurance claim forms.
Fortunately, in the fourth grade, our son’s doctor told us that, while he should continue to work through lingering social delays and sensory issues, he no longer fit the diagnostic criteria for autism or any other developmental disorder. We were ecstatic about our son’s progress, but kept our lifestyle of combating autistic symptoms in place. Just in case.
Now 18, our son will most certainly “lead a normal life.” He is in his senior year at his third high school, and has already been accepted to colleges. He has earned four varsity letters in football, is a gifted musician, has taken eight Advanced Placement courses, and is an Eagle Scout.
Despite his obvious success in conquering a serious developmental disorder, we still have regular moments of worry because our son is still “quirky.”
There are days when we see autism creeping around like a phantom, threatening our son’s future. A far away look in his eye. The sound of him muttering to himself in the shower. His stubborn aversion to certain textures in food and clothing. His social awkwardness. His tendency to avoid interaction.
We try to put it out of our minds and hope that these ghosts of his past are simply personality traits that won’t stop him from forming meaningful relationships in life. But I still worry.
Recently, our son landed the role of J.B. Biggley in his high school’s production of “How to Succeed in Business Without Really Trying.” We didn’t know anything about the musical, and as usual, our son was not forthcoming with any details.
We arrived on the night of the first public showing.
Buying our tickets and finding our seats, several parents accosted us, gasping, “Your son is the one playing JB Biggley?! He is amazing! He steals the show!” Knowing our son’s lack of interpersonal skills, we thought they might be misinterpreting his quirks as character acting. However, when he made his appearance on stage, we understood what everyone was talking about.
Simply put, our son blew everyone away.
At the curtain call, the actors took their turns bowing to the audience. When our son stepped up and bent at the waist, the crowd jumped to its feet, giving him the loudest standing ovation. And no one knows he was once diagnosed with autism.
Sitting in our seats in total disbelief, it was as if all our years of hard work had come to fruition. Like comprehending the vastness of the infinite cosmos, my mind was boggled by the magnitude of our son’s potential and the promise of his happy future.
He’s going to be just fine.
I’m so glad I found your blog. A long lost therapist 🙂
Thanks for all your help/patience/expertise so long ago! Thanks to your help, Hayden has no speech issues, and the weird thing is, he’s a whiz at foreign languages!!
Lisa, I am relatively sure that you told me about one particular therapy that you believe had an especially large impact on Hayden’s amazing progress … namely Floortime therapy. Did I get that right? Do you really endorse this therapy?
Hi, yes, I used “Floortime” play therapy which was developed by Dr Stanley Greenspan (died a few years ago) and Dr Serena Wieder PhD. They wrote several books on the subject, ans The Child with Special Needs became my bible. This therapy really worked for us.
HOORAY!! sd
Thank You for sharing..I don’t have a special needs child so I can’t relate expect my friend has a son with Autisum. I have learned a lot from her and like you, she researches everything and changed his diet and has him in a TON of therapies . She is wonder Mom..I met her and her family about 2 yrs ago..Then her son was almost 4 but with a mental age of a two year old.. A couple weeks ago we went to their home to celebrate her son’s sixth birthday…He has come a VERY LONG way…She keeps saying there is no cure but as long as parents are wanted and learning and doing their research, all our children will know they are blessed no matter what..Thank you for sharing..
Great to hear about parents making strides….warms the heart!
I can’t believe how similar your son’s story is to my own son. He is also a senior this year. Please tell me that your son is going to GA Tech, so that they can be roomates!! I’m completely serious. My son was diagnosed with Asperger’s syndrome at age 4 while he attended a special preschool for his developmental delays. Today he is an Eagle Scout, a wonderful saxophone player and will soon be going to college. He has worked so hard and come so far. I don’t think as a mom I will ever not worry to some extent about my kids, but I know that he has a bright future ahead of him. Thanks so much for sharing your story!
Thanks for sharing this! I think other parents need to hear that there is light at the end of the tunnel for a lot of these kids who are in the trenches combatting their symptoms. Alas, my son is not going to GA Tech, but CONGRATS to him on that acceptance! Interestingly, my son just got accepted to RPI (Rensselaer Polytechnic Institute) to study Computer Science with a music composition minor. Both of our sons are technology minded! So cool! I wish your son all the best for his bright future!
Was it really 1995? I recall the time spent at CHOMP, your in-laws at the hospital and how they thought CHOMP was so not hospital-looking! Hayden is so handsome and if he keeps up with acting I can say I knew him before he was born! You guys did a great job and continue to do so. Funny because our goddaughter, Camrin, (Dave and Noreen’s youngest) is also into drama, and dancing. She just turned 17. How exciting for Hayden. We wish you all the best!!
Thanks Cindi! We miss you guys – wish we could get together for a little of “The Recipe”….
Ditto to what Patrice said.
You and Francis deserve to be very proud of your son and yourselves. After all…his success is rooted in not only his innate abilities and talents but your endless efforts, interventions, and guidance.
Bravo!
Thanks Maz — you were there to support us at every turn and we totally appreciate it!
Bravo and blessings. John
Thanks John!
“He’s going to be just fine.” Words that mean so much to a parent. Thanks for that, Lisa. I wonder what his future holds…so much hope!
Thanks Susan!
God bless Family. The team we are born into, never have to try out for, and will walk to the ends of earth if we really ask them to.
Wow, great saying ….. I may have to borrow that one!
Your family story has helped more than just your son. Thanks for sharing your journey with me back in 2008–we have been on a long healing journey for our boys ever since including biomedical treatments, dietary changes, supplementation, therapies, and now immune support. They are thriving though not without challenges. Without your input (thanks to a mutual friend that connected us), I would not have known where to start the healing process when autism/special needs were of concern. Thanks for sharing then and for sharing again now in this blog. I hope our 3 sons continue on their successful healing journey just as your son has done.
Hi Mary! I’m glad to hear you and your boys are doing well! And tell out mutual friend I said, “What’s up, T-bone? !”
What an amazing source of pride for you!!! I wish there was a video of his performance!!! But somehow, I’m thinking there may be future opportunities to see Hayden shine. Congratulations to all of you. You and Francis have definitely taught your kids what you know, which is to delve into life 110%. Nicely done!
Thanks Sarah, and from the looks of the recent pictures of your family, your teaching your kids to delve in 110% too!
I should not have read this in a public place. People look nervous around openly crying women in a hair salon! What a wonderful outcome for a great kid and a wonderful set of parents!
Thanks Michelle and sorry about the public embarrassment!
I know, on a lesser scale what you mean, Lisa. All of my kids had severe food allergies. My son especially used to have temper ‘rages’ when he had milk or sugar or red dyes etc. Life was hell as I tried to find foods they could all eat without meltdowns. Schoolwork suffered, and each year I had to explain to the new teachers that my kids ‘are special’. As a result of having to eat weird food for school lunch and birthday parties, they struggled being different. Nothing as serious as your case, though. So glad your son is thrivingÔǪand a little parental worry IS needed! That’s what being a parent is all about. Some but not too much! Great blog.
We all have something to deal with I guess, and I think it keeps us humble.
Humble, exhausted and grateful that things aren’t worse!
As tremendous as Hayden is (and his accomplishments are tremendous), I truly believe that he is what he is today because of you (and Francis). I was amazed and overly impressed with your hard work and dedication in those early years. I know that you will say that you did what any parent would do, but I do think that you went further than most of us could or would have. And I think that your two amazing daughters are testament to the fact that you also took the time that they needed for their development. I know that it wasn’t (isn’t) always easy, but you made it look like it was all part of the plan. Hayden will be fine because you gave him the skills and love that he will need for the rest of his life! Kudos, mamma!
Thanks P, who would’ve expected that you and I, two goofballs from high school, would’ve turned out to be pretty decent parents?